Downright Joy

Discovering joy in unexpected places – a journey into Down's syndrome, Dyspraxia & Autism


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Funny that.

Laughing boy

Did you wake up laughing today?

My daughter did, just like she did yesterday and the day before that, and the day before that too.

Did someone tell her a joke? There’s no one else in her room. Did she remember something funny she saw the day before? Perhaps. Not sure.

Maybe she was thinking about the bus journey to school and how bumpy it feels as she rides, strapped into her wheelchair. Or maybe she was thinking about the funny songs the Music Man sang to her when he came to her class; especially that one about the pirates- that’s funny. Or maybe it was the sheep on the farm she visits, or the goat that jumped on the trampoline with her one day. Whoever heard of such a thing?! Maybe it’s the strange plaster casts on both her legs that she currently has to wear. They do look kind of funny I suppose.

It’s no good asking her, she cannot give an answer. Though she is nearly eight years old, she has no words you see. And right now, only laughter.

Sometimes she is sad. Sometimes she is grumpy. Sometimes she is in pain. Sometimes she is tired.

Just like you, just like me.

A range of emotions.

But because she is non verbal she has to express them differently.

Unlike you, unlike me.

But laughter, chuckling, giggling, rib tickling, snort inducing, full on raucous belly laughter is very often her first emotion of the day.  I’d love to know what makes her laugh.

Did you wake up laughing today? Or did your thoughts turn immediately to worries?

Fears of the future perhaps, or just concerns about the day ahead. So much to do, so much to accomplish. What ifs and what abouts firing off in all directions in your head before your feet have even hit the floor.

My daughter woke up laughing.

My daughter has Down’s syndrome. Many people think her life is not worth living. They think she would be better off not being born. They called her life a ‘risk’. They said she is abnormal. They spoke as if giving birth to her was some great tragedy.

Funny that.

 

 

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Cheers

Cheers TV titles Screen shot

I have a nostalgia for certain 80s & 90s American TV sitcoms. The moment I hear the opening few bars to, say, Cheers, for example, my mood lifts, however I’m feeling at the time.

Set in a bar in a Boston, the regulars and the workers all share their lives and experiences with each other. The highs, the lows; the trials, the triumphs. If, like me, you stayed the course of 11 years and 275 episodes, you got to know and love each character. The bar, the decor, the stories, the romances, the heartaches, the people. That theme song:

Sometimes you want to go

Where everybody knows your name

And they’re always glad you came…..

I felt sad the day Cheers ended. Of course it had to end. Everyone was getting older for one thing. Nothing stays the same. Life moves on. Still, I was sad.

This week, my daughter, Hazel, moves on from the only school she’s ever known. She’s been there nearly eight years; since she was two months old.

It’s her school but to us it’s so much more. It’s a place that has not only nurtured, cared for and educated her but us too. A family centred school.

It’s the place that scooped us up and surrounded us with support in those early, traumatic days when she was a poorly baby. The days when we struggled to come to terms with her diagnosis of Down’s syndrome and of what we mistakenly thought that meant for her future, for our future. I was very focused on that diagnosis back then. Unhealthily so. Hazel’s school is the place where I learnt that her diagnosis was not nearly as important as I first thought. It’s the place that helped us find, adjust to and embrace a new ‘normal’ in the midst of all the uncertainty and upheaval that we were facing. It’s the place where I found hope for a new kind of future; a joy-filled one.

A practitioner from the school came to visit us when Hazel was around nine weeks old – barely just home from the hospital NICU – to invite us to join their baby group. At that point I was still in a state of shock and unprepared to be thrust into a world of disability and special needs, let alone special schools. I remember asking her about the other children in the group. What were their diagnoses? What did they have? What was wrong with them? And though I may not have used those exact words, it’s what I was thinking. I’m so ashamed of those questions now.

Her upbeat answer surprised me: Oh, I don’t know!

Actually, I’m sure she did know, but the children’s conditions were not foremost in her mind. Their names, however, were. She knew them by their names. Harry, Ruby, Jacob, Louise*……children. Each with a name, not a diagnosis.

This school is a place where everybody knows your name.

And they’re always glad you came.

Mainstream education, or indeed society,  has much to learn from a school like this. There should really be no need for a policy on ‘inclusion’ when your starting point is the child’s name and not their disability.

This school is a place that has grown so familiar to us. It is our safe place. Our refuge in the tougher times when we’ve needed a shoulder to cry on. Our happy place when there has been so much to celebrate. A place where many new friends have been made.

So many joy-filled days.

Treasured memories.

Hazel’s happy place.

And as we now must say goodbye to this beautiful, caring, extraordinary, award winning school, we are sad; though we know it is time for Hazel to move on.  We are filled with gratitude for Hazel’s teachers, therapists and support staff; past and present. Whenever I see the word excellence I think of them. People who continually go above and beyond their official duties and who are, without doubt, the reason my tube fed, disabled daughter can now walk a few steps or even eat some actual food. People who have crafted and shaped a hope-filled future for Hazel. People who care deeply about all the children in their school and who constantly look for ways to bring out their full potential.

I love how Stephen Kelly, writing about Cheers in the Guardian in 2018 puts it,

 “Cheers, after all, always knew how to recover from setbacks. It was sturdy, consistent, familiar – a place where everybody knows your name.”

Thank you to every single person at Hazel’s exceptionally special school.

We’re so very glad we came.

“Every child, every person needs to know that they are a source of joy; every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed.” 
― Jean Vanier, Becoming Human

*Names changed for privacy.


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Camino

Camino pic

I’ve long been fascinated by the Camino de Santiago; a network of pilgrimage routes leading to the cathedral of Santiago de Compostela in North Western Spain. Known also as The Way, it’s a place where, according to tradition, the remains of Saint James the Great are buried. It’s a route that has become popular not only with pilgrims, but also hikers, cyclists and others looking to challenge themselves as well as looking for something else, something deeper. A pathway walkers often say they tread to find peace and a new sense of purpose to their lives. A restorative ramble in a remarkable landscape.

A highway to hope.

I would love, one day, to go on the Camino and experience if for myself, though given my less than enthusiastic approach to camping, hostelling or living without my home comforts, I’m not sure if I am really up for the challenge. Yet I am still drawn, not just to the beauty of the pathway itself, but to those who tread upon it. Countless lives that have walked that pathway for all kinds of personal reasons. Some religious, others not. Each story important and relevant, in some way, to all those who walk it. Why did they take that pathway when they could perhaps have found an easier way to relax and find inner peace?

I think the answer lies in the hope that they find along The Way. Hope that wells up as they experience its beauty, its ruggedness, its challenges. Hope freely given to them as they meet different people, from all walks of life, from many different countries. They may go there for all kinds of reasons of course; exercise, well being, a chance to experience a different culture. But hope. Hope is often what spurs them on.

Hope is often the overriding factor in most of life’s major decisions. It can be found at all life’s twists and turns. At crossroads in our lives we look for its signpost. As we enter new relationships, contemplate a marriage perhaps, start a family, or look for a new job, new home and so on we look for it, find it, and take it with us. We may pore over all the facts in our possession and weigh up the risks involved in making big decisions. But we almost always make our choices with a measure of hope that is just as important to us as what we already know.  Hope is vital. It is a pathway we must tread, though it may make us vulnerable.

Hope is the reason I write.

The pathway I now follow is not the one I was signposted to. Eight years ago, on discovering at my 12 week scan that the baby I was carrying might have Down’s syndrome or some other genetic condition, doctors pointed me in the direction of another pathway. Society also pointed to it and still does. They said I should follow the road that will get me out of here. One, they told me, would be the best for me, and for my unborn child. A pathway that would lead me to a place where I could simply try again. They saw no hope for this child, only suffering and misery, leading to death sooner rather than later. They looked only in one direction. No one told me about the other pathway, the one I am now on and which I had to find for myself. They didn’t give me a choice, though they claimed they were. This pathway isn’t easy, I’ll admit. Yet it is a pathway signposting hope. A pathway filled with many people from different walks of life. Some of those people saw it and chose it, others found themselves on it unexpectedly.

At times, the terrain is rugged, challenging and exhausting. It’s at these times you can quickly come across others on the path who know how to find a way through. People who can steady you as you climb over the stiles or tell you the best places to find help or rest. And though the ground beneath your feet may at times feel rocky and unstable, the view is breathtaking. The beauty to be found along The Way is what keeps you going. Always changing, always something new to marvel at, be thankful for and draw strength from.  For all the challenges it is still a pathway you are glad beyond words that you discovered.

For any woman and her partner who is being signposted in only one direction by doctors, or society or even their own personal prejudices (and I had lots of those, believe me) please know that there is another way. A crossroads has more than one sign. Step aside, look behind whoever or whatever is in front of the signpost and realise it also points in another direction.

It points to another Camino.

A highway of hope.

For lived experience of what it is like to bring up a child with Down’s syndrome check out these websites and meet others who have discovered hope in similar situations:

Positive About Down Syndrome

Wouldn’t Change A Thing